New Pill Lets Celiacs Eat Gluten – Popsugar
‘Gluten Pill’ Developed To Help Celiac Sufferers Enjoy More Off-Limit Foods – Huffington Post
New Pill Will Let People With Celiac Disease Eat Gluten-Filled Meals of Their Dreams – Popular Science
Celiacs rejoice! There’s now a pill that lets people with celiac disease eat gluten – AOL
Pill May Help People with Celiac Disease Eat Gluten – Youth Health
Canada Just Developed a Miracle Pill for the Gluten Intolerant – Munchies
What do all of the above articles from the past few days have in common?
- They all discuss a new drug being developed for those with celiac disease.
- They are all flat out wrong.
- They are all dangerous and misleading.
- They are all written by people who troll for headlines but don’t spend the time to read the facts.
Speaking of FACTS, here are some facts regarding the new “miracle drug”, as some are sadly calling it:
Fact: The pill is still about 3 years away from being available; if then.
Fact: The pill has proven to be safe in early stages of testing, but has not been proven to be effective yet.
Fact: The pill isn’t a cure for celiac disease.
Fact: The pill is designed to trick the intestinal tract so it does not react to gluten.
Now note that nowhere in these FACTS does it state that celiacs will safely be able to eat gluten. But that does not stop a major publication from posting this beauty in their article:
Seriously? I’ll say that again. Seriously??
Look…I always rail at the media and deservedly so. For the most part, they look for the shiny object that will garner clicks, regardless of the facts. Of course, every time I say this, I am reminded that I too am part of the media. But that causes me uncomfortable internal conflict, so I just ignore it. 😉
What’s my opinion of a drug for celiacs? I am against it…100%. Our bodies are telling us gluten is poison and you want me to take a pill so I can do what exactly? Eat food that I KNOW by body rejects? I’m good…thanks.
And I get the argument that many have stated about taking it before going out to help with cross-contamination. I really do. But I see a few issues with this.
- Side effects. What are they and will they be worth it?
- Celiacs will cheat. I’ve seen it over and over and over again on Twitter the past week that many feel this will be a license to eat gluten.
- Which leads to celiacs being taken less seriously by restaurants.
- Which will lead to more celiacs getting sick.
Lather. Rinse. Repeat.
I’m not personally knocking Hoon Sunwoo, the professor of pharmaceutical sciences who is developing this pill. He has friends who have celiac disease and his intentions are most likely very pure. But do you know what one of his main motivations was? Here’s his quote: “My friend is celiac. We haven’t had any entertaining with beers. This is not treating the celiac disease or curing celiac disease. It’s just to try to help them improve their quality of life so when they want to socialize with peers or friends.”
Personally, I don’t need to drink a beer with my friends to feel normal. And if I did, Glutenberg works just fine for me, thank you. Along with vodka, or tequila, or…you get the picture. (Is it happy hour yet?)
I love what Jennifer Esposito had to say about the drug:
Yet another band aid over a problem to make money. I personally don’t want to be with “friends” who would make me feel uncomfortable because I couldn’t have a beer with them to feel “normal” over my pesky little inconvenient disease. Furthermore, to take a pill that would allow me to eat or drink something for two hours that my body just does not want? What happens after that two hrs? No thank you. My advice: EAT CLEAN and get better friends.
Yep!
So ignore the headlines folks. There is not, nor will there be anytime soon, a drug that will allow those will celiac disease to safely consume gluten.
And even if there were, would you take it?
Agree that some of the headlines were way off the mark … and some of the coverage was poor. I loathed the use of the word ‘miracle’ too.
But this isn’t a drug. My understanding is it’s a supplement, designed to interact with gluten, not the body. Fasano’s AT1001 is a drug though – are you 100% against that one too?
I’d love to know what Sunwoo thought of the coverage …
Hey Alex…always nice to hear from you. I would also love to know what Sunwoo thought of the coverage. Similar to what Peter Gibson thought of all of the headlines that NCGS was not real.
I am not familiar with Dr. Fasano’s drug so I will withhold comment until I read about it.
You might be interested in looping back the drug that should be getting coverage for passing through Phase II of clinical trials (Feb 2015), which Dr. Fasano as well as other lead researchers are testing (Phase III). Larazotide Acetate goes to work on the carrier protein zonulin (of which CD people have an overproduction in their gut) to render it less capable of transporting the gluten protein across the small intestinal mucosa. Since we know that the GFD is not enough to treat CD effectively, it’s important to research medication that could limit the damage of an accidental ingestion of gluten. All of us who have CD have had an accidental exposure at least once, even when being extremely careful. I’m personally excited about the development of a drug that could mitigate the harmful effects of gluten in people with CD. As for the other researcher you quoted, I too am offended by his personal beliefs, yet if his drug works, I really don’t care about what he said as much as what the drug could do in terms of giving CD people another safety net for accidental exposures. I think we all know that the GFD is here to stay for us — and for myself, the GFC + AIP in combination is a much safer diet. Having an additional option that is effective is a good idea!
I worry about things that appeal to peoples desperate hopes. When we want something bad enough we turn off the logic portion of our brain and rationalize the risks.
I would love to be able to order gluten free at restaurants without placing my health in the hands of complete strangers. I do, however, have concerns about how this drug will interact with my body and of course all the societally ripple effects that will occur when un-informed people consider Celiac Disease “cured”. The law of unintended consequences is a powerful dynamic and I can see it having its way with this new drug.
“And even if there were, would you take it?”:
Not a chance…proverbial snowball…
I don’t take any pills now and have no intention of starting. As you & Jen said, EAT CLEAN works just fine for me. I’m thankful at my age, weight & hairstyle that I now know what to do to regain & stay healthy. Maybe a distant future pill can help others willing to take on that unnecessary risk for me.
Congrats on your most helpful Forum!
From what I understand, this pill works similar to Lactaid to help digest lactose. That does not work 100% of the time neither does it allow those with lactose intolerance to always be certain to “enjoy” milk, cheese and other lactose filled products WITHOUT digestive upsets.
But while lactose does NOT cause serious damage to the body, gluten does actually damage the body. So for Celiac’s and NCGS there is a very real danger in these products.
WORSE, villi damage can go undetected for some time before symptoms present.
There are some nutrients and vitamins which are so critical to life the body maintains storage of them for times of famine and natural disaster. When you damage the villi responsible for absorbing those nutrients, you will notice few if any symptoms of it until it reaches a critical point. BY then it’s likely that emergency care in a hospital might be required.
One example is iron. It can take some time before the storage of iron is reduced enough to notice. Some of the early symptoms like dizzy spells and leg cramps can easily be written off. And they come and go for a period before doctors will think of anemia. IT can become critical before the villi recover enough to absorb it sufficiently well to avoid being admitted to the hospital.
I find these things self-serving and dangerous. I already have people suggest that I “pop a pill” and just shut up about all this “gluten sh$t already”. You know the press will blast this all over. Then what happens to those of us who can’t or don’t want to risk our lives trusting to some pill?
And I totally agree with Jenifer. People who find treatment of my deadly disease tiresome are not people I want to spend time with around food.
I think our community should also Not Panic in addition to not getting over-excited. For those of us who react to even very small amounts of gluten and need to follow the “gluten contamination elimination diet” – GCED – (google full phrase if you haven’t seen Fasano’s work on it), a supplement that works as this is purported to could be a wonderful occasional add-on to their gluten free diet since even common “gluten free foods” are often contaminated with trace amounts of gluten (most naturally gluten-free grains, green tea, you name it.) I think as a community we should be open to it for some who may need it as an adjuvant to clean eating while continuing our efforts to educate, educate, educate.
Additionally, we don’t know that the researcher’s “friend” in question wasn’t just using celiac as an excuse. Seriously, *WE* all know that we can go hang at a bar with friends and just abstain, or drink cider, or some other libation. I laugh at that statement every time I think about it. Either the “friend” wanted *out* of a situation or the researcher or journalist just thought that quote would make a good sound-bite. I have to say, words have been put in my mouth in print before when I absolutely did not say them. …and we all have been suckered by the click-bait.
Third, that researcher is in Alberta. Alberta for cripes’ sake – a wheat growing capitol of the world. Having grown up in a similar agricultural area, it is a very foreign idea that wheat is not the “staff of life”. Educate, educate, educate – repeat after me: “wheat is not necessary for life. Many great civilizations thrived without wheat.” Again, either he’s ignorant or he just said that as a sound-bite because he (or reporter) thought it would sound good in such an ag community.
Chill out. Once Big Pharma has a pill option, then we will have a nice big explosion of diagnosis and then *those* people will become more educated – many will need a GCED. I would put money on there being less reliance on a pill in the long run than we are panicking about. It’s like Dumbo’s “Magic Feather”, the thought of the pill will help people make the leap more readily which many of us know is a psychological barrier for some. As the newly diagnosed feel better eating gluten-free and learn that the diet isn’t quite as difficult to maintain as they feared, the less they will rely on the “Magic Feather” of a pill.
This kinda reminds me of something:
A couple of weeks ago Norwegian media reported that some scientists had found the probable cause of why people with coeliac disease do react to gluten; our bodies mistake gluten for being a virus (!) and therefore start an immune reaction (sorry if my medical terms are a bit off, it is not my field and English is not my first language…)
The original article also mentioned the possibiliy of a vaccination program for coeliacs, as well as the development of a pill that could help in difficult cross-contamination situations. However, they did not write anything about a pill alone being the solution for “the coeliac problem”.
Anyways, I have not seen anything about any of this in any English news nor international coeliac sites (but I haven’t looked hard for any news on this subject either). But in this part of the world it’s Summer for once, and all of Norway kinda stops working during the Summer holidays. – so, the scientists working on this projects are probably enjoying the (for once) okay weather instead of writing press releases and sending them all over the place:)
Responding to the actual post: Would I take a pill? If it was magic and could fix everything (if only for two hours at a time) with no risk nor side effects, of course. But in general my answer today is NO. But on the other hand, being able not worry about cross contamination when eating at a friends house, or when eating out, would indeed make my life a lot easier… So, maaaaaybeeee. Sometimes, on special occations… Maybe.
From what I understand all the possible treatments for CD that are in the pipeline may help with cross contamination but none of them will allow one to eat gluten freely. Dr. Fasano says this about the Zonulin drug too.
There is so much more than just gluten to hate about wheat and other glutenous grains. I have no desire to ever eat the stuff again. I would like something that would take the worry out of cross contamination issues when I eat away from home.
As far as Sunwoo’s drug, only safety studies have been run. Efficacy studies are set to run next year. So we don’t even know how well it works or even if it works.
The studies use damage to the intestine as a guide to see if the drugs are working. Only problem is that gluten can affect every single organ and sometimes the damage can take years to show up. By just testing for a gut reaction, could they be missing damage elsewhere?
I will continue to have an open mind. Many medications are used to successfully treat a range of autoimmune diseases (Crohn’s, lupus, HIV). This particular drug may not be The One, but I have hope that research and medicine may find a way for people with celiac disease to happily and heathfully eat gluten, should they want to opt for that path.
Medication is always very personal, whether you’re talking about anti-depressants, miracle celiac cures, or anything else. I’d like to reserve the right to make my own choice, and I’ll consider myself lucky that I have the choice to make. Cheers!
Would I take it? NO!!! Doctors are not aware of what all Celiac Disease entails, so what makes them think treating just one aspect of it (gluten) is the answer? Studies have been done that show antibody production to other wheat proteins besides just gluten. When doctors start treating their patients based on their own, individual genetics, I might feel confident in a doctor’s beliefs but, since they are pretty much of a mind set that we are all biologically identical, and treatments they prescribe will work equally as well on everyone, I won’t be taking anything to allow me to be “normal”. The world needs to open their eyes to the fact that we are all different in what we can and can’t eat to be healthy.
I would take this medication, assuming it is safe, effective, and the side-effects are minimal. I was diagnosed five years ago, at the age of 55. I’ve never cheated. No, not even once. Because I understand the seriousness of my auto-immune disorder. But I *do* travel, which frequently necessitates dining out. I get glutened at least once a year…and it is miserable. If this drug can prevent my gluten reaction (which resembles nothing so much as salmonella poisoning) should cross-contamination happen (say, in a restaurant,which is where I usually get glutened, no matter how clear I am with the staff) I would not lose 2-3 days of my trip. It would be nice to be able to travel fearlessly. And without Imodium.
So you obviously did not listen to the interview with the actual person working on this supplement and are just railing the bad reporting, which I understand, but…
It’s not a drug, it’s a supplement.
You’re 100% against it. Why are you against an option for those of us afraid of cc at family events or when dining out and just want to be extra safe? That is a very closed minded way of looking at OPTIONS.
Side effects? Why would you ask that, it’s a supplement, not a drug. Maybe that’s just a result of bad research because you assumed this is a drug?
You bring up JE’s quote which talks about a band-aid to make money, yet you quote the original idea behind this guy’s research. So, you prefer we get rid of friends instead of having a security option for those questionable situations? I certainly would not want to be your friend if you’re not allowing us our own options for our own health.
As for your statement that this is not, nor will there be any time soon a pill, blah blah blah. That’s just the closed minds we need, isn’t it. Basically you’re saying there’s no need for research on our disease or for some help in those situations where there may be some cc going on, just get sick and deal with it. I for one, wouldn’t mind feeling a little more at ease when attending family functions where I can’t be positive because I didn’t make the meals … but I’m sure you’d feel fine sitting at home on the couch
B6 is a supplement. Considered safe at levels way beyond the RDA. I, however, cannot use B6 or get rid of excess properly, so it builds and builds if I am not careful of supplements with B6 in them. Even supplements can have have bad effects on some people. Just commenting because your comment made it sound as if all supplements are safe for all people.
Good for you Brent. I’ve been recently diagnosed and this site is the most depressing, closed-minded place. Here is the home of the doom mongers and the self-pitying (but pretentiously positive) sycophants. Most normal people steer clear of these websites. I prefer to look at the proper medical research papers and take this guy’s twisted interpretations with a huge pinch of salt. Even though he can reasonably stand behind his point of misleading headlines, the rest of his ramblings remove any confidence I have in his knowledge.
You know I can hear you, right?
“Someone earning a living off Celiac sufferers chastises potential medical breakthrough that may reduce Celiac sufferers need for his media efforts.” Now there’s a headline.
No Mike, unfortunately just another misguided headline from you which strays aimlessly from the Truth. If Gluten Dude only earned his living from this website then even his puppies would starve.
As someone who Gluten Dude has helped tremendously wade through the gluten quagmire to the betterment of my good health while suffering from gluten caused cancer and not cost me a single red cent, I couldn’t stand idly by and read your attempt to besmirch his good name. Shame on you Mike.
GD’s post was simply bringing attention to the egregious headlines, which he did, because most of society today only reads headlines and fails to exert enough effort to read for comprehension as they should. These headlines to which GD brought attention were patently false and should be brought to task for their insidiousness.
A grand and nefarious attempt to impede medical science to preserve his exploitation of the celiac community….wow, Gluten Dude must be like a Bond Villain.
Dude, do you have a white cat?
No, but I may be getting one now 😉
I earn a living off celiac sufferers? Wow…you have no idea what you are talking about.
Here’s the thing folks…I speak for myself. Nowhere to I ever say that I speak for the entire community. Don’t like what I say? That’s cool. Start your own blog. It’s a big internet out there.
There must be something in the stars right now. People have been wacko! Keep doing what you are doing and know that most of us appreciate your efforts, including the time you take to research and share what you know.
Thank you again.
Thanks. I am so disappointed in some people right now. Some can’t possibly see two sides to this story so obviously my side then becomes wrong. I get so discouraged by people some times.
Anyone who takes medical advice from a newspaper or blog headline needs serious re-education.
Sometimes I have to eat in restaurants. If there is something that works and provides some benefits. Great. I’m not going to bother thinking much about it until the experts I trust tell me that yes, the evidence says it works. I’m too busy having a life!
GD,
I believe ALL the links you mentioned including the original from the July 13th edition of the Edmonton Journal, except Munchies’ article missed the point! Their phrase “think of it as Beano for bread” is the best description, period. So maybe the GS folks will get a break in 2 or 3 years, much like those who take insulin for diabetes or a pill for say, cancer. Would YOU take that pill?
Hoon Sunwoo just wanted to relax and connect with his friend and family over food–like none of us have heard of that before!? He also cautioned that this supplement is not a cure or treatment but about quality of life. Hello! Is this not what GD is about? Connection? Quality of Life?
As a diagnosed Celiac and the daughter of a wheat farmer who grew up in Saskatchewan now living in Edmonton, AB, I felt compelled to respond. BTW I am a card carrying member of the Canadian Celiac Association and Alberta membership of the national association is around 20 to 25% maybe due to the research done by Sunwoo and friends at the universities in Alberta? Maybe the education done by the CCA members in Alberta?
I know I will NOT be a testing Guinea pig for efficacy and that my friends is MY personal choice and right to quality of life. However, this must be one of the “pill strategies” Dr. Frasano mentioned when he presented at the national CCA conference in Calgary in 2014.
I know my strategy is “NO gluten = NO problem”.
Now all the above aside, the technology is owned by the U.K.-based Vetanda Group Ltd., as they saw the value in the research and provided $2.5M in funding at the TEC incubator. No Canadian brain drain here just brain fog…..or is that technology drain?
Thank you Hoon Sunwoo for 20 years and Jeong Sim for a lifetime of professional research.
Hoon is closer to relaxing and not worrying about poisoning his friend while connecting.
And that is how research or strategies happen……slowly, with passion and compassion.
Well thought out comment…I appreciate that. The name-calling and cattiness was getting on my nerves.
Yep, mine too!
Time for some logic without sensationalizing….or missing the whole point!!
I never drank beer even before the diagnosis, I just don’t like it. It never prevented me from normal socializing with my friends.
So…after spending the last 2 years sick from being glutened in a restaurant, I am now sensitive to more foods than I can eat. 5′ 3″ and 84 lbs at my lowest. This week finally up to 87 lbs. I go for IV Meyers cocktails once a week and live on supplements to get the nutrients my body doesn’t digest properly from food anymore. SO, NO I am not willing to risk eating anywhere or anything that can screw me up more. No I’m not willing to be an experiment for some pharmaceutical company. Just today I was out with my husband, brother in law and sister in law who have all been in my life for 33 years. We go into an Italian restaurant where I though we were just having a drink at the bar, I went to use the restroom and when I came back I find out they ordered a pizza!!! I was so f…ing mad. We could have walked another block to. GF sushi restaurant where I could have at least watched them eat! I actually left the restaurant. So other people can get bored or tired of it and decide who cares, but as a celiac I don’t want to spend what’s left of my life sick in a bathroom. I just got p…ed all over again!!
I will take it without hesitation. I don’t drink beer, but I want to be able to eat deep fried mozza sticks and calamari, and french fries, and have a veggie burger with a soft squishy bun when I’m out with friends without damaging my intestines. I NEVER “cheat” and have been extremely strict about avoiding CC. But I am miserable and hate this food-paranoid Celiac life.
Agree with you 100%. I do cheat a fair bit already (I have no symptoms and all my other health tests (full blood count, etc) have come back fine). But I would buy a box of these pills. Hurry up with them. I’m going to Oktoberfest and might need a few (ha ha)!
I agree with both you and Louise.
First, I have never cheated on the Gluten-Free diet. Do Celiacs really cheat? Well maybe so, and perhaps that is why so many of the Celiac forums are full of people complaining about feeling unwell. I rarely feel unwell since my diagnosis. But then I don’t cheat, don’t eat at restaurants, and bring my own food to friends’ houses.
I just can’t relate to anyone not interested in an adjunctive therapy and/or a cure. Maybe this has something to do with my being a Medical Librarian/Researcher and spending my career in academic medicine, so I have a fairly decent understanding of how Clinical Trials work. Maybe it is because my brother died of a disease people now live decades with (AIDS.) Science works. There are people out there dedicating their lives to understanding Celiac Disease and searching for therapies and/or cures. It used to be ignored, but not anymore. In just the past year the medical literature and research on CD has exploded. There is good work being done and if that work yields a handy prescription or treatment, I’ll be the first in line.
I’ve been gluten free for 14+ years and have found that it gets easier all the time. I would not want to take a drug (or even a supplement) that would attempt to do what I can do naturally and that’s avoid consuming gluten to keep me healthy and happy. Have you ever read or heard the list of possible side effects to all the new drugs that are coming on the market daily? They’re possibly worse than the disease or condition that the drug is trying to cure. If any of you have been truly miserable and found the “miracle” that saved your life, you probably wouldn’t be tempted to cheat. Besides, there’s gluten-free beer available most places and as the Dude mentioned, there’s always vodka or tequila! Cheers!
I hate taking drugs. Dietary supplements (to give me more of something I’m already getting, but not in sufficient amounts from what I eat) I’m okay with, but something that is “like Beano for gluten” is too much like a drug for me. And I’m cheap; the price of the stuff has yet to be determined. What if it’s five bucks a pop? Or ten? And can it be safely taken day in and day out, or does it have some cumulative unpleasant effect?
I ate bread, pasta, etc. without noticeable problems for decades. But I apparently have the predisposing genes, and they got switched on (or maybe off) a few years ago. Now if something like a vaccine, or some course of treatment that would put things back the way they were when I could eat glutenous food, were available, I’d sure consider it. If the researchers came to understand the triggering mechanism(s), particularly if it’s (they’re) fairly easily avoided, then it might be practical. But I’m guessing that something like that– an actual cure– is at least a couple of decades away, and may never come about.
Dick L,
I understand your position and that is your right to choose.
I just wanted to comment on the your vaccine preference. Dr. Frasano mentioned a number of options being explored by medical researchers: a) breakdown the gluten or what the articles mention; b) close the leaky gut junctions; and c) vaccine. He of course could not comment further as the status of the research was in process and not reviewed etc. but did say depending on outcomes the next 10 years…….
Out of 200 to 300 people in attendance at the national celiac conference, Dr. Frasano asked by show of hands, preference for treatment of a, b or c listed above, ironically, the vaccine garnered the most votes, less than 10 people!!
Cure is a strong word but to eat anywhere without fear of self-inflicted pain or bodily injury, THAT is a celiac’s dream. Understanding the immune system and finding the cure to flip the auto immune switch off, THAT is the researcher’s dream. We cannot have one without the other.
I’m not disagreeing with anything here, I just want to mention that speaking as a Canadian, the U of A is a very well respected research facility. Among the top in Canada and probably the world. This is not some fly-by-night operation.
If this drug makes it through their testing, it will be effective and safe.
Shame they have to deal with the media in the meantime.
I totally agree with you! I wonder if anyone here has heard of ColdFX and taken it to feel better? Know where the research was conducted?
U of A
The problem is, not all of us feel alright on a gluten free diet. For those who it works for, that’s great! But for me, I’m still not healthy, I’m healthier than I was, but not healthy. I’ve also had several accidental glutenings despite never eating out, not eating processed food, never eating at anyone’s house, and eating only high quality meat from gluten free specialty butchers. In the meantime, I’ve lost my social life and the self confidence and raison d’être that goes along with it. A pill that I could take to reduce cross contamination effects? I’ll be the first to get it at absolutely any cost!! I’d never intentionally eat gluten while taking it, but as a tool to make me less miserable when I inevitably get glutened, I’d give literally anything for that!!
And THAT is what Hoon Sunwoo and Jeong Sim have worked toward PROFESSIONALLY for the last 10 years….to provide YOU, a celiac, that TOOL or strategy to make connecting socially less damaging both physically and emotionally.
QUALITY OF LIFE is about choices, now our community MAY have more, in the coming years.
PS. I so hear you on the health part…..I am 2 years into `treatment`after waiting 17 years for a diagnosis, but it is getting easier to eat out and I am starting to feel better. 🙂
It is frustrating for sure. I keep discovering additional related issues, it’d be so much easier if all I had to do was avoid gluten!
Very good point – choices absolutely increase quality of life in any area of life, this is no different.
You mentioned you live in Edmonton. A couple of questions, if you don’t mind. How is Edmonton for gluten free options at restaurants? I see the GF Diner is all GF! Also, being in wheat country, do you have any issues at harvest time with airborne pollen, either in the country or on the edges of the city in areas that border the country?
While it is likely that the media is overhyping this, I strongly disagree with the idea that no medication should be developed to help people with celiac. At a minimum, having it as a guard against cross-contamination would be great. Maybe some people have a situation where they can always make their own meals from raw components, but many of us do not.
Beyond that, I see the idea as no different from an antihistamine. Is gluten-dude against their use by those of us with allergies?
Seriously, chill on the negativity. Anything that can help will be welcomed my me and, I’m sure, many others.
Just in case anyone is interested in the original article:
http://www.biomedcentral.com/1471-2172/16/41
The title is:
Effect of anti-gliadin IgY antibody on epithelial intestinal integrity and inflammatory response induced by gliadin
Naiyana Gujral1, Ju Won Suh2* and Hoon H. Sunwoo1*
FrankieD
Thanks very much for posting link to the article, which I read in its entirety.
Fascinating! I understand my Celiac Disease even more than before. Further, I greatly appreciate the diligent work of these obviously talented research scientists.
The article had me at “immunizing chickens with gliadin”.
For me personally, especially because gluten and my over protective immune system nearly killed me with systemic inflammation and related cancer, I cannot risk eating ANY, gluten, cc or otherwise, even with hopes a pill can protect me. However, I do believe this is very valid research and, as I stated above, may be helpful for others in the future who are able to take on risks which are unnecessary for me.
This actual article further proves Gluten Dude’s original point regarding those insidious headlines. As for “The Media”, I’ve already thrown them in the basket holding politicians, unnecessary governmental entities, “political” races of all flavors, etc. and many other mostly unnecessary noises in my life which jibber jabber way too much and produce mostly unproductive and unnecessary confusion for the general public. At least Gluten Dude’s tangential service in The Media has served the public good, namely me in particular, and helped kept me alive for which I’m grateful!
FrankieD, thanks again for further enlightening me on this Monday morning!
As a mom of a 6 year old boy with cd ( and daughter of a mom who passed away from cancer with T-cell lymphoma at age 71 caused by complications of cd two years ago), I truthfully would be thrilled if there was a pill that could help my child have a cheat moment on rare occasions. However, wouldn’t ever want to have him be the guinea pig… 🙂
It’s been so hard to watch my little guy navigate this disease which sometimes feels like a huge Conspiracy theory. I’m sure it’s not… But I sure struggle with it. 22 times a year at school he has to sit and watch kids eat birthday cupcakes while he has to have some alternative treat… At church he has to have separate sacrament bread passed for him, and literally everywhere he goes outside of the home, food safety is of concern. I do my best to try and provide matching food choices whenever I can, but it certainly isn’t anything I would wish on anyone. (Even after 18 months of living this way..I still struggle with it and have so many questions.)
Whether this pill works or not is yet to be seen, but I sure am grateful to know that there are people working on cures and solutions. Totally get the complications that could occur if people think there is just an easy fix….but I am sure praying that one day there will be! Just my opinion…..and As an Alberta I am also pretty excited to know that research is happening so close to home.
Thanks for your blog and all the work you do to advocate and inspire people with celiac disease.
Side note: I found out the hard way there is a VAST number of vodkas that are not gluten free. In fact more of them today are distilled from cereal grains, primarily wheat, than from potatoes, especially the flavored varieties of vodka.
If you are going to drink alcohol, you are probably much, much safer staying away from grain alcohol and sticking with wine. Time to join us wine snobs, *tee hee*!
I usually do, though they have some with added things my friends sometimes pick up. What I really hate is when I try to contact those companies to double check, like this shimmer wine someone picked up, I can’t remember now the name of it, but the company on contact couldn’t tell me it was gluten free or said something along the lines of “We can’t guarantee it’s gluten free”. Instead of just saying if the facility is free of cross contamination or not and if it has anything that normally contains gluten. Or a simple ingredient list.
Unfortunately “gluten free” is a legal claim with a specific meaning. If the legal / regulatory affairs / QA department doesn’t make that claim, you really cannot expect a Customer Service agent to make it.
I have always wondered why almost all food and wine companies bury their ingredient and processing information in the deepest, darkest, hardest to find corner of their website. A bit better UX would make it easier to get it.
Sorry for your troubles. It’s frustrating. At least, once you know the answer for one product, you often do not need to keep checking (unless they change the formulation! Argh!).
This thread amazed me. I feel that we come to your site, much like if we came to your home. We choose to be here… there are options and a great big world wide web to find anyone or anything. So firstly, by choosing to come, if you find something you don’t like… go home… leave… get up and walk away. We all now know that sitting is bad for us. Secondly, love it or hate it Gluten Dude does an awesome job of IN HIS SPARE TIME keeping up to date with research. It doesn’t matter what he thinks or believes, he is not forcing anyone to do what he wants ….. he ended his blog with a question. He was giving his opinion much like the good Doctor hopes his friends will over a beer or two in the future. That is what makes this a great site. We can share opinions. For some the path will be to keep things as simple as possible. To eat clean and avoid anything and everything that could harm them. This does not make them joyless or less fun to be around. It takes commitment and great passion to find a way of making life gluten free. Others might choose to take a pill or vaccine as they believe that that will give them the best shot at good health. There will always be space for different choices – as there should be. What interests me is the believe that ‘normal’ life means eating out/pizza and beers. There are many other versions of normal life in the coeliac world… especially as numbers in India and so on are now increasing. Let us rejoice that research is taking this disease seriously. Let us be wary of snake oil salesmen. Let us be kind to each other. Let us thank a man who takes the time to bring this all together in one well designed site. And finally, let us thank a family who support their man to spend hours of his time, sitting in front of a computer helping strangers. Wow. What a gift.
Best. Comment. Ever. Thanks Joyful…I seriously needed that (as my wife and daughter are upstairs and I am, yes, in front of a computer).
And for the record, if some of the people in this thread are coming to my home, I may be changing my locks 😉
I’ll try the pill…hell!…I’d lick a donkeys ass if it would ease my Monday morning beer shits
My husband and I recently had this discussion. I have Celiac and he does not. He was stunned when I told him that under NO circumstances would I trust a pull that claims to make it safe for me to consume gluten. It’s just not worth it. As much as he’s really been supportive and an advocate for me, he still thinks it’s will power or that I’m an exception to the rule, because, surely, most Celiacs cheat now and then. I’ve told him over and over again that it’s not will power, but self-preservation that keeps me 100% gluten free and that, while I don’t doubt there are Celiacs who cheat, I believe the majority of us don’t because we know the consequences to our villi.
Where’s the pill? It’s coming up on 3 years now?